Caregiving is an Individual Experience

I’ve been thinking a lot about the recent death of Elizabeth Edwards. The news spoke about how she was a “mother to the end”, leaving a letter for her children. Edwards has a 28-year-old daughter and then two children around 10-12 years old; as we all know from the headlines she also has an ex-husband.

So I began thinking back to all the support groups I facilitated to reflect on the differences in caregiving between a spouse and a child. I’m focusing on end-of-life care as we have just passed National Hospice Month and the death of Elizabeth Edwards is in the news.

When spouses are caregiving for someone who is terminally, as you know, you’re reflecting on times you spent growing up with the person you’re caring for, not only chronologically, but emotionally and spiritually. There is an investment in the relationship and it’s perfectly natural to begin wondering what will happen to you if the person you’re caring for dies. (I’ll address living after the death of a spouse in coming weeks)

Hopefully if there is time you can think back on those times that provided you and the person your caring for the deepest bonds, positive memories, and what it was like to be part of a team. You’ve been a team throughout the illness so that story continues. It is also a time to grieve together on things you won’t get to do together in the future. This is about the reality of end-of-life care.

When the adult child is the caregiver for the parent there are different dynamics. I remember when my grandmother was quite elderly and on a decline she apologized to my mother for having to reverse roles. She was sad and embarrassed that she couldn’t still be in the parental role, even though my mother was more than willing to care for her mother.

Adult children, depending on if you will have a surviving parent or not, will be facing life as an orphan. You’ll have to complete your life journey without parental guidance in the physical realm, and rely on memories and lessons learned throughout the years.

Caregiving is an individual experience. It’s important that when you hear someone’s account of their caregiving experience that the listener understands the ramifications of the impending death of the patient. I’ve been focusing on end-of-life, but the journey of these emotional and spiritual shifts come when the parent or spouse is diagnosed because everything changes.

Understanding the differences between spousal and child caregivers is important for support group facilitators to understand. If you’re concerned that your facilitator doesn’t address these differences have them make contact with me and I can help guide them to make your support group experience truly supportive.

What’s your caregiving story? How do you think it differs from others? What has come up for you since becoming a caregiver? I’d love to be your sounding board.